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Saturday, 31 January 2015

I said to my GP earlier in the week: "I have to see a doctor at a nursing home tomorrow, but I forgot why I made the appointment."

She answered: "It's for your memory."

I said: "That explains why I forgot."

So now, in my late 40s I'm seeing a gerontologist. Apparently memory problems are the usual reason for younger people to see one.

After I get a brain scan, an MRI and some blood tests, the gerontologist (geriatric physician) may also want me to see a geriatric psychiatrist.

A functioning brain is important, and I really would like to have one. But still, I don't really feel it's fair that I should be going to a specialist on ageing, not when I'm not really at "retirement age" yet.

To add insult to injury, a stranger said to me today that when she gets old, she wants a cool mobility scooter like mine.

I know lupus does some crazy stuff, but needing to see a gerontologist in my 40s? Lupus, this time, you've gone too far.

Sunday, 25 January 2015

It's worth checking it out when you're looking for unique handcrafted gifts, from jewelry to artworks, to scarves, to toys, and the range keeps increasing.

All of the businesses listed have one important thing in common: each is owned/run by someone with a chronic illness.

Aside from the obvious physical issues that come with having a chronic illness, we also face a serious financial issue - our capacity to earn a living is reduced along with our physical abilities, while the costs of medication and doctors increases our expenses.

So when you buy from a business listed in the directory, you don't just get some amazing products you couldn't get anywhere else. You also get to help someone with a chronic illness to pay the bills, buy the pills, have a just that little bit extra financial freedom.

Our little small and micro-businesses won't make any of us rich, but every time someone buys something we produce, it does make a difference.

So if you haven't looked at the directory for a while, why not take a look now? I'm sure you know someone having a birthday some time soon, who would just love something they can't find in the local shops.

Saturday, 24 January 2015

It didn't surprise me at all that the first person interviewed in the story had lupus.

You see, I came very close to being one of those homeless women. A couple of years ago, I had to stop work completely because of lupus at the same time as my rent increased to an amount more than my income. I had a miracle that Christmas - a home I could afford to rent became available just as I most needed it.

It was almost a year after that before my superannuation fund finally put me on permanent retirement, with a payout that finally enabled me to buy a house.

Many women's stories don't end as well as mine.

So here's the basic problem spelled out:

Most people with lupus (and a number of other similar conditions) are women.

Women tend to have less superannuation than men, because of time out for the workforce to have children, etc.

Relationships are under extra stress when you add chronic illness into them, so quite a number of lupies don't have a partner to "support" them.

The unpredictable nature of lupus means that even part-time work can be hard to maintain.

Many lupies are unable to convince their superannuation funds that they are sick enough for retirement on medical grounds. (We usually don't look as sick as we are.)

Many lupies are unable to convince Centrelink that they are sick enough to require a Disability Support Pension because of their illness. (Again, we usually don't look as sick as we are.)

Rents keep going up to ridiculous levels.

Lupies have the added expense of managing our illness, on top of everyday life expenses.

I don't have a solution to the problem. I wish I did. It weighs on my mind a lot, that I was saved from this additional problem, when so many others aren't.

The only thing I have been able to do so far to help is to establish the Lupus Business Directory on this site. Many of us have set up small or micro businesses. We have hobbies (eg writing, beading, etc), which produce saleable things. The Directory is a place for people with lupus and other chronic illnesses to advertise our micro businesses. I don't say that buying one beaded bracelet will save a lupie from homelessness, but it will help a little.

Oh, if you're a lupie (or someone with another chronic illness) with a small or micro business, and you're not already on the directory, please email me the details. There's no cost to be listed.

Thursday, 22 January 2015

When I first moved here, I decided I'd keep helping out at Ashgrove West church. It meant an hour drive each way on a Sunday, but I love the congregation, and I really feel I belong there.

Now, I've had to admit it's more than I can manage.

The Sunday before last, I was so sore and tired after the drive, I struggled to stand to lead communion. Everyone could see just how hard it was. No-one seemed surprised when I said I have to give up.

I'm going back next month, to lead communion for the last time.

In the meantime, I've been to the local church, Ipswich Central. It's nice. The people seem friendly. I don't yet feel there's anything I can really contribute, but I'm sure it will come in time. God will help me find a place in this congregation. And, of course, it means I will have the chance to get to know more people in the community I actually live in.

It's not bad. It's just change. I know that. But I'm still grieving over what I have to give up, and resentful that this is another thing lupus has taken from me.

Saturday, 10 January 2015

Putting vegetables in a saucepan, and putting it on the stove to cook worked perfectly.

It was the meat that was the problem. I was just going to take it out of the freezer and toss it in a non-stick frypan. How hard could that be?

With brain fog, anything can be a challenge.

At first, it wouldn't cook. It took me a while to realise I hadn't actually turned on the hotplate.

A few minutes later, the kitchen filled with horrible, acrid-smelling smoke. You see, I keep these neat little aluminium covers over the hotplates when the stove is off, so I can use the stove as an extra food preparation surface. I hadn't taken the cover off, and the paint on it had burned. It only took a pair of oven mitts and a bit of juggling to remove the cover, and replace the hot frypan directly on the hotplate.

All good. I managed to cook and eat dinner without incident.

It wasn't until the next morning, I discovered that after all the fuss, I hadn't turned the hotplate off when I'd finished cooking.

Yes, my stove had been happily cooking nothing for about 12 hours.

New plan: my long-suffering son who lives with me will now have to double-check absolutely everything I do, just in case I risk burning the house down.

Friday, 9 January 2015

People sometimes ask if I think everyone with lupus should be on a gluten-free and lactose-free diet.

My answer is that lupus is different for everyone. If you have the same gut symptoms as me, it's worth checking with your doctor whether you need to restrict gluten and lactose.

So what are these symptoms? Usually I just say I have reflux and irritable bowel. If you don't really what those things mean, I guess it doesn't mean a lot.

Here's in detail what is going on (for me, it could be different for other people):

Lactose is the sugar that occurs naturally in milk. (Most things that end in -ose are sugars.)

When I have lactose I get reflux. Sometimes that's just an uneasy feeling in my chest. Sometimes it feels like hunger, and makes me desperate to eat endless amounts. Reflux also takes away my ability to realise I'm full, so I just keep bingeing.

That's mild reflux. If I've had a lot of lactose, I get a more severe reflux. That is just an incredible pain in the middle of my chest. A couple of times, I've found myself on an electrocardiograph machine, because a doctor really wasn't sure if it was reflux or heart attack. Once, I ended up in an emergency department bed, being fed a mix of a local anaesthetic and mylanta, through a long straw so the anaesthetic got to my gut without making my mouth numb.

Gluten is the protein found in wheat (including spelt), oats, rye and barley.

When I have gluten I get irritable bowel syndrome. For me, this causes diarrhea, which is urgent and frequent, and comes with lots of blood. If it's really bad, I pour blood between the loose bowel motions as well. This all comes with either severe cramping pains, or ominous volcanic rumblings accompanied by bursts of toxic gasses.

Recently, my doctor told me it was OK to try a little lactose and gluten again, to see if I have built up some tolerance over my years of not eating them. Now, I can have a very little without a problem, but that very little is exceeded quickly.

At home, I still cook my lactose free and gluten free diet. When I'm out, I allow myself small amounts. And sometimes, when I'm enjoying time with family or friends, I go past my limit, deciding that the enjoyment of the moment is worth the consequences.

So do I recommend lupies (or anyone else for that matter) go gluten-free and lactose free? Well, no, unless they actually need to.

Wednesday, 7 January 2015

I'll try hard to take care of my diet, and to do a little bit of exercise. If I fail, I won't beat myself up over it, and will just try again the next day. I'm going to do what's good for me, without worrying about the number on the scale (because prednisolone and any number of other things affect that number any way.)

I'll try to keep on top of my work around the house and garden, so I don't have lots to catch up. But, if I don't get to keep up with everything, I'm OK with that.

I'm not going to stress about what I don't get done. If you visit me and the dishes aren't done, don't be surprised. (The carpet will be vacuumed - my son does the heavy jobs.)

I will rest if, and when, I need to, and I won't feel guilty about it.

I will try to build some relationships with other lupies locally. (I've already arranged a get-together for the Lupus Association Queensland, at the end of February, so lupies who live in this area can meet up.)
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Most of my life, I have been mostly interested in caring for other people. This year, I'm aiming to learn to care properly for me. (That doesn't mean I will forget everyone else.)

Other blogs and books by the same author

Blogs

Patchwork

Patchwork is an anthology of short stories and poems by author and blogger Iris Carden. In this volume, you will deal with the aftermath of a dog bite in Bad Moon Rising, spend a sleepless night with The Possum in the Roof, and investigate a weird religious cult in The Time of Blood and Death. The print version of the book has a bonus story not in the eBook version.

Beside Still Waters

A book of sermons and brief reflections on Christian Scripture, by Rev Iris Carden. There is no specific order to the items in the book, they are intended to each be a "surprise" in that they are not related to the items around them. It is hoped that in each, the reader will find something new or special, or unexpected, a message from God. Rev Iris Carden has a Master's Degree in Theology and more than 10 years of experience as a Christian minister.

Cat-it-orial

Mr Bumpy is such a talented cat, he even runs his own website: mrbumpycat.com. He is a blogger, and a very bad cat. His favourite hobby is world domination. His next hobby is harassing the humans and other animals he shares a home with. In this book, you can see the world through the eyes of a megalomanicat, and some of the other animals who share his home.

Group Meeting

(Novella) In a facility for people recovering from mental illness: a group of people with sinister pasts starts to be visited by a girl who doesn't exist.

Karlee

Failing author Terry Dixon is made an offer that seems unbelievable. He can have all of his problems solved, have everything he has ever wanted, for a price. The price is something that "will not be too difficult" for him to pay - but it is not specified what it actually will be. With bills mounting up and a deadline looming, Terry agrees to a deal with something he knows nothing about.

About the Author

Iris Carden is a retired Uniting Church minister and former journalist. Lupus forced her to stop working. On good days she writes.

I've been nominated. Please endorse me.

This is an Australian Blog

Some of the issues, resources, information discussed may not be relevant to overseas readers. (Some things may not even be relevant outside of Queensland.)

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Contact Me

My email address is iris@sometimesitislupus.com

Have Something to Share on Sometimes, it is Lupus?

Lupus Links

Do you run a lupus-related website, or blog? Submit your links for the Lupus Links Page by emailing iris@sometimesitislupus.com and using the subject heading "Lupus Links." Tell me your page name and web address. If you have a social media page for lupus awareness/support, you will find you can now add your link to the page directly.

Lupus Business Directory

If you have a chronic illness and own/run a business, you can submit it to the Lupus Business Directory (listing is free). Email iris@sometimesitislupus.com using the subject heading "Lupus Business Directory." Give me your name, your chronic health condition, the name and web address of your business and a picture if you'd like one included.

In Memorium

You can add your personal memorial messages in memory of lupies who have fallen in the battle against the wolf in the comments section of this page. Or you can email them to iris@sometimesitislupus.com with the subject heading "In Memorium".

Warriors' Wall (goes live World Lupus Day, 10th May 2013)

If you are a lupus warrior who has something to say, please email iris@sometimesitislupus.com with the subject heading "Warriors' Wall". Include in the email, a nice clear photo of you, your first name, year diagnosed, country, and what you want to tell the world about lupus. (Up to 100 words.)

Blog written by Iris Carden. Permission is given to copy, with attribution, for non-profit purposes. Picture Window theme. Powered by Blogger.